Enacting chronic illness with and through digital media: a feminist new materialist approach

ABSTRACT

Few studies have sought to examine the ways in which people with chronic health conditions engage with digital health technologies across the full spectrum that is currently available. In this article, we present four illustrative vignettes based on interviews with women with chronic conditions who participated in the Australian Women and Digital Health Project. The vignettes show how these women used mobile apps and online resources to find and share information and support, monitor their bodies and health states and self-manage their conditions. We draw on the theoretical approach of feminist new materialism to identify the affordances (of human bodies and of technologies), relational connections, affective forces and agential capacities generated with and through our participants’ use of digital media. Our study highlights the important role played by both digital and non-digital encounters and actors. The vignettes demonstrate the complexities of entanglements between human sensory embodied experiences, face-to-face encounters with other people and digitally-mediated experiences and social networks in configuring and enacting lay expertise and self-management of chronic health conditions. The vignettes show ‘what a body can do’ when people living with chronic illnesses are actively engaged with the possibilities of digital health technologies available to them. They also highlight the limitations of some digital media – particularly apps – and the ways in which the design of these applications can fall short of providing promised benefits to members of minority and marginalised social groups such as people with chronic illnesses.

KEYWORDS:

• Digital health
• digital media
• women
• chronic illness
• feminist new materialism
• qualitative research

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes on contributors

Sarah Maslen is Assistant Professor of Sociology in the Faculty of Business, Government and Law, University of Canberra. Her research focuses on learning, decision making and the senses in medicine, engineering, outdoor adventure and the arts. Her current research interests include use of digital media in knowing about health and disease.

Deborah Lupton is SHARP Professor in the Faculty of Arts and Social Sciences, University of New South Wales, Sydney, working in the Centre for Social Research in Health and the Social Policy Research Centre and leading the Vitalities Lab. She is the author/co-author of 16 books, the latest of which are Digital Sociology (Routledge, 2015), The Quantified Self (Polity, 2016), Digital Health (Routledge, 2017) and Fat, 2nd edition (Routledge, 2018). Her forthcoming book Data Selves will be published in late 2019. She is a Fellow of the Academy of the Social Sciences in Australia and holds an Honorary Doctor of Social Science degree awarded by the University of Copenhagen.

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.